I came across the concept of the 'missing middle' in Mind Over Matter (PDF), a Senedd Report on a step change required in mental and emotional health support for children and young people (CYP). I read this as I prepared to meet Lynne Neagle, the report’s author and Deputy Minister for Mental Health and Wellbeing.
|For the purposes of this blog a definition of the missing middle is: Those children and young people whose health is impacted by a multitude of factors causing distress - often disabling but not threatening to life and limb. The missing middle is a population whose needs are not well met.|
Who are the missing middle?
Although the missing middle is defined for those with mental health difficulties, it equally applies to young people with physical health manifestations.
Lynne describes these young people as having distress, often a disabling form of distress, attributable to a multitude of factors, but who do not have access to the guidance or support they need. These factors, often undisclosed or unrecognised, may include adverse events and experiences, neurodiversity, carer roles, attachment disorders, family discord, bullying, unhealthy sleep patterns and diets, and adverse thoughts and behaviours. They often occur in combinations and result in a loss of agency, schooling, physical activity and routines.
In turn this may lead to impacts on physical health, such as obesity, social isolation, disrupted family life and a potentially spiralling decline with further effects on sleep, anxiety, depression and withdrawal.
Services for the missing middle are patchy, if - for many - they exist at all. In terms of mental health services, about 12% of seven to 16-year-olds (and up to 1one in four of 17-19-year-olds) develop mental health or emotional problems, with 50% of all long-term mental health difficulties beginning before 14 years of age and 75% by 24 years of age1 ,2 ,3 .
However, the majority have a presentation and set of needs that do not meet the specific criteria for specialist CAMHS or neurodiversity services and support. This is the population that Mind over Matter calls the missing middle.
- A case study: What happens to a 15 year old girl* with hip pain, reduced mobility, sleep disturbance and school absence?
- If she has arthritis, there is access to high cost drugs (estimate £6,000+ per annum) and access to physio and psychology.
- If she has a change in her femur on x-ray, she has access to surgery (sometimes of unproven benefit) plus physio.
- If she has neither - no pathway of care and typically bounced around many different services including general practice, general paediatrics, orthopaedics, community and hospital therapy services and possibly an adult pain service.
- Resulting in - multiple repeat investigations in search of a diagnosis and a lack of focus to interventions that do not help and run the risk of making the young person feel at best hopeless and at worse a sense of blame for their problems.
- And in the long term - withdrawal from healthcare, school absence, reduced life opportunities and poor adult health outcomes.
* this is a composite case study
In my job I meet young people like this all of the time
So is this something unique to rheumatology? And furthermore, what is the scale of the missing middle in physical health? First off, if we take conventionally treated long term conditions, such as arthritis, asthma, epilepsy or diabetes, young people are twice as likely to develop a mental health concern as the normal population.4 ,5 Typically, this is 20-40% of CYP with these conditions.
The reasons for the development of mental or emotional health concern is not down to the disease process itself, but is a combination of the factors cited above triggered or amplified by the impact of the disease. And if we take persistent school absence of >10% as a marker of distress or loss of quality of life, studies have shown asthma to have a similar or greater impact to anxiety, although there is much overlap.
These are the conventional long term conditions. If we take the population with persistent pain or fatigue, the scale of the problem is much larger.6 , 7 Persistent pain affects between 8% and 40% of young people and significantly affects quality of life in 6%.8 Chronic fatigue affects approximately 0.1-4% of CYP.9 According to a large US study, chronic pain is cited as a principal factor for school absence in almost three times as many children as for asthma, while in a UK study chronic fatigue accounts for up to 1% of persistent school absence.10
This is echoed by other more general studies including an ONS (Office for National Statistics) study examining disability in young people aged 15-34 years old in the UK, and by OECD and WHO reports of the global burden of health in CYP.
Pre-pandemic there were over 25,000 pupils in Wales missing school due to a medical conditions
Why pick school absence? It is an easily measurable patient related outcome across all medical conditions.11 , 12 Furthermore, persistent absence of more than 10% of school is associated with reduced life opportunities and poor long term health outcomes. It has also doubled in size since the pandemic.
While using school absence as a measure to quantify the level of need can be seen as crude and does not account for all of the missing middle, it does give a sense of the level of need and the impact of physical health symptoms compared to mental health difficulties.
Using school absence also provides a platform for an opportunity for mental health services, education, community care and charities in working together and addressing all needs with a new and systems approach to care. This is already being undertaken elsewhere including in Belgium, India and Australia with some impressive results. This is something I hope to discuss in a future blog.
So what next?
We … think everyone who works with children and young people should be trained in emotional and mental health awareness, to tackle issues of stigma, promote good mental health and enable signposting to support services where necessary. We think that this, more than anything, will enable us to deliver the step change that is urgently needed.
This is already starting to happen in mental health
In line with the status of national priority, the report also outlines a need for ring-fenced resource to make schools community hubs of cross-sector and cross-professional support
for emotional and mental well-being. This builds on the important work produced by T4CYP(2) who from 2015 have developed the Matrics Plant framework, NEST/NYTH school support and the Whole School Approach. While all are still early in their rollout, (a topic for a future blog), broadly their aim is to collectively produce a new systems approach to mental health to effectively support considerably more CYP, by improving access to care, but with minimal extra resources.
By working on identifying needs, not diagnosis, and early signposting to the right level of resource with some coaching support, it avoids a linear approach to diagnosis and treatment with one size fits all, the conventional medical contract of care. Placing it firmly within a value based healthcare agenda.
Why is this not extended to physical health?
In a nutshell, there is no reason why it shouldn’t be.
As clinicians, in order to break the cycle and empower the young person and family to self manage, this starts with time and a sensitivity to their confounding factors, a confident and sometimes collaborative assessment and effective explanations and signposting.
This echoes one of the recommendations of the report: this early intervention stops the spiral of decline, avoids embattlement and prevents excess referrals within a conventional system that cannot cope.
For now I believe we need to be aware of this missing middle. As this population includes patients referred to all of our healthcare services, we all need to think about our responsibility for their management. The care of the missing middle is already starting to happen in mental health, medical training, education and social service, and we now need to think how their care can be scaled to physical health.
We can do this by developing knowledge and skills for managing distress, identifying time within our practices to use these skills, and seeking greater collaboration and systems thinking to ensure effective and high value care.
- 1Mind Over Matter: senedd.wales/laid%20documents/cr-ld11522/cr-ld11522-e.pdf
- 2RCPCH data: stateofchildhealth.rcpch.ac.uk/evidence/mental-health/prevalence/
- 3NHS Digital Data: digital.nhs.uk/data-and-information/publications/statistical/mental-health-of-children-and-young-people-in-england
- 4Brady, A., Deighton, J., & Stansfeld, S. (2021). Chronic illness in childhood and early adolescence: A longitudinal exploration of co-occurring mental illness. Development and Psychopathology, 33(3), 885-898. doi:10.1017/S0954579420000206
- 5Glazebrook C, Hollis C, Heussler H, Goodman R, Coates L. Detecting emotional and behavioural problems in paediatric clinics. Child: Care, Health & Development 29: 141-149. 2003
- 6Groenewald CB, Tham SW, Palermo TM. Impaired School Functioning in Children With Chronic Pain: A National Perspective. Clin J Pain. 2020 Sep;36(9):693-699
- 7King, S., et al., The epidemiology of chronic pain in children and adolescents revisited: a systematic review. Pain, 2011. 152(12): p. 2729-38
- 8Roth-Isigkeit, A., et al., Pain Among Children and Adolescents: Restrictions in Daily Living and Triggering Factors. Paediatrics, 2005. 115(2): p. e152-e162
- 9Collin SM, Norris T, Nuevo R, Tilling K, Joinson C, Sterne JA, Crawley E. Chronic Fatigue Syndrome at Age 16 Years. Paediatrics. 2016 Feb;137(2):e20153434
- 10Groenewald CB, Giles M, Palermo TM. School Absence Associated With Childhood Pain in the United States. Clin J Pain. 2019 Jun;35(6):525-531
- 11Nijhof SL, Maijer K, Bleijenberg G, Uiterwaal CS, Kimpen JL, van de Putte EM. Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Paediatrics. 2011;127(5):e1169-e1175
- 12Crawley EM, Emond AM, Sterne JACUnidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinicsBMJ Open 2011;1:e000252